day+204

this is denise i am updating for michelle. last night around 10pm alicia started throwing up and had a temp of 101 so michelle took her to the er and they were there all night and they finally admitted her at 7 this morning and nichelle is exhausted. alicia tested positive for pnemonia and she needs everyones prayers. michelle is relly exhausted and needs prayers also. i will be there monday for a week to help her and let her get some rest. please keep them in your prayers-Denise aka NeNe

Day +201

O my I can not believe it has been over two hundred days since Alicia received her "New chance at life". I never realized when we started this journey that we would still be in Cincinnati over two hundred days later. She has came a long way though and I thank the Lord every day and every night for every day and every breath and every moment he has given Alicia. She is truly a fighter and a Winner. I am so very proud of her!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!





We are just hours from being discharged. Alicia started eating a lot better yesterday, and today we are being discharged back to the RMH. Alicia is surly showing out before she leaves. She is singing for every nurse that comes in, and she even called Alyssa which is one of favorite Nurse's here on the South side of A5 along with Liz. She even started dancing and popping her butt when Dr Philipovich came in this morning to check her out. I was soooo embarrassed. Then she asked the Doc for a dollar because she sang also. Everyone just laughed and I turned beat red. I shouldn't even have been surprised.





Alicia said good bye to Theo again, this stay he was here with her every moment. They are such good friends. She had to make sure he got all of his meds last night before she left today, it was so cute, she cares so much about Theo. I took a picture of their "last night together" as you can see on the table he gets just as many meds as she does.



Hopefully this is the one and only set back and we are on the road to Kansas soon. I can not wait til the day when we touch ground and do not have to return here for a long time!!!!!!!!!!!!!!!!! Thank you so much for everyone who believes and supports Alicia. Without each and every one of you we would of not made it this far without going crazy. There are so many of you ( you know who you are) that have been extra special to us and I want to thank everyone again and again for everything you have done and the many many prayers that brought us this far.

Day +199

We will start witht he good news first...... Alicia ate last night!!!!!!!!!!!!!!!!!! She ate half of a plate of Speghetti and a WHOLE bowl of cereal!!!!!!!!!!!!! I was so very happy to see he eating. She kept looking at me to see if I was looking, then she would ask me if I was proud of her. I told her I was soooooooo HAPPY!!!!!!!!!!!!!!!!! I even took a picture so everyone could be so proud of her.

Now on to the not so bright news. Alicia started having problems with her Blood Pressure last night. She got as hgh as 161/99. After giving her lasixs and hr pottying a million times, they finall gave her aother med ( at midnight ) and then after they ad tocheck her Bp every five minutes for the first 30 minutes then every ten for the next thirty minutes and every half hour after that. Around 2am she finally went down to normal only to wake this morning very hig again. They just gave her some more eds so hopeflly it will be under control fast.

Dr Davies just came by to see Alicia and she said that if we could get her Bp under control by Tusdaythen we could goback to the RMH. HORAY!!!!!!!!!!!!!!!! She also stopped all of her Tpn and gave her a 6 hour window on her feeds!!!!!!!!!!!!!!!!!!!! It looks like we will be out of here soon!!!!!!!!!!!!!!!!!!!!!!!! Maybe it had todo with a " want out picture I sent her"

Day +197

All is still about the same in room 547. Alicia still has a very good attitude even though she is still in the hospital. She wakes up every morning and asks me if we are going to the rmh. My answer to her is, are you going to eat today? And her answer is aways, I can't my tummy is to big.


She has been on TPN now since Tuesday, I just hope her Liver numbers don't start to rise like last time. So far so good. They also started her back on NG feeds through her tube yesterday. They started them very slow at 5ml's per hour which is just enough to coat her stomach. Her Hemoglobin was also low yesterday at 7.o so she got some red cells yesterday. Her platelets continue to grow on their own. Yesterday they were up to 92,000 which excited me so much. Her Wbc is also great. It has finally came down which the Doc chalks up to the RSV virus she is fighting. Yesterday her WBC was 10.8.


Thank you again for the many prayers and support. I am very confident that 2009 will be a great year for Alicia, and the many other children and Adults fighting FA.